Jump to content
ACN Latitudes Forums

New to the board


Recommended Posts

HI,

 

My name is Heather - my 8 1/2 yr old son was diagnosed a few months back with mild tourettes.

 

Backing up, my son started to have what we thought were mild transient tics when he was 6 or so. He had a forced cough that wouldn't go away, then a soft grunt (which he still does as he falls asleep or listens to us read him a book). September of 2007, when he was 7 yrs old. he had emergency surgery to remove an optic pathway tumor. Surgeon cut through left frontal lobe to get to the tumor. Tumor was completely resected - pathology report though was inconclusive. Surgeon suspected an optic glioma or astrocytoma but we still don't know. My son has MRI's often (now every 4 months) to moniter that all remains clear. In fact he has one this Thursday - please keep him in your thoughts.

 

After surgery, my son's tics seemed to disappear. Then the grunt returned along with speech interjections (not sure if these are tics but he adds "uhs" between words - sometimes frequently, sometimes barely noticeable. Last March he started to do head tossing and eye rolling - all to the left side. An EEG showed right frontal lobe seizure activity during sleep though no seizures have occurred. Neurologist told us that tics are centered in the basal ganglia and so the tics don't appear to be related to the surgery. I have been reading Sheila Roger's book though, and frontal lobe abnormalities in ts was mentioned. I did some reading when the head tossing/eye rolling started and started my son on epsom salt baths which I believe has helped (knock on wood - I am now a superstitious mom I think!). He is no longer doing the eye rolling or head tossing - he did go through an episode of eye blinking after a very stressful playdate. The eye blinking lasted several days and I see it now and again though not as frequently as I saw it initially.

 

I am so GRATEFUL to Sheila and to this board - I have learned a lot just reading posts in this past week. I am going to talk with my son's doctor about the Kids Calm, especially since magnesium seems to help him. I emailed with Sheila Rogers (she wanted to make sure I had received her book - there was no record of shipment - how great is she to check!). I wrote her back saying we had received it and told her about my son. She said that, given his history, she might start with the amino acid test so I am looking into that.

 

I look forward to being a part of this board :)

 

Heather

Link to comment
Share on other sites

Heather,

 

Welcome. I am so sorry I don't have time to respond to you properly now. I can later tonight.

 

In the meantime, I will assume that your boy has been on both antibiotics and steroids during the events surrounding his neurosurgery. You may want to look for a pattern of tic supression while on either of these. My thinking is that the tumor may have caused some general neuroinflammation; steroid treatment may have quieted it. Did cessation of corticosteroids occur in March?

 

Also, did you mean "September of 2006, when he was 7 years old"?

 

You are in my thoughts. I'll check back later.

 

Tami

Link to comment
Share on other sites

Hi Tami and thank you so much for responding. Yes it was 2006 - I think I have 7's on my mind since he was 7 yrs old. He was on steroids only for the two days prior to the surgery and not after. Yes, you're right - I had forgotten about the antibiotics but I remember that he was on them during his hospital stay (about 10 days total). I'll have to ask what he had been placed on.

 

Heather

Link to comment
Share on other sites

Heather,

 

You mentioned that your son was dx'd with Tourette's. Is there any family history of tic disorders? Without a positive history, I find it very coincidental that he would have both an intracranial tumor and a de novo case of Tourette's syndrome.

 

This diagnosis seems to be applied to symptoms without regard for how they evolved. With what his little brain has been through, I'm sure it will take time to heal. I would search around this site for ways to reduce inflammation and stress and build up his immune system.

 

I think the thing all of our kids have in common is that they are more fragile and vulnerable to their environment. To whatever degree you can improve his environment by boosting his immune system, reducing his allergens and toxins, optimizing his nutritional status, reducing his stress, and increasing his exercise and sleep, he will become stronger and more resistant.

 

I would take things very slowly with your little guy. You might want to start by getting all the synthetic chemicals out of his diet. You mentioned magnesium -- according to a lot of sources we are all deficient and the rda is too low. Seems like a safe place to start.

 

Goodnight.

 

Tami

Link to comment
Share on other sites

Hi and thank you all for your warm welcome :lol:

 

No history of tic disorders - though we do have extended family members (namely 2 of my cousins) who have OCD. I agree that the brain tumor and having tourettes are more than coincidental. My son is supposed to have an appt on Friday with the neurologist but I think I will call and cancel as we have other doctor appts in the afternoon and I know that the neurologist only wanted to see us back if the tics worsened.

 

Good news is my son's MRI last week was stable - apparently no sign of tumor regrowth. It has now been almost 18 mos and no tumor growth is an absolute miracle. Immediately following surgery the neurosurgeon suggested chemotherapy to eradicate any stray cells that might be cancerous. The neuro-oncologist vetoed this saying he was very reluctant to give a child chemo who may not need it. The neuro-oncologist regulates my son's care and I will talk to him more about proceeding in the way outlined on this board and in Sheila's book. We see him Friday afternoon and I plan on talking with him - just have to get my questions and requests in place.

 

Thank you for the support in taking things slowly - that makes sense to me. My oldest (age 18) has ulcerative colitis and we are now advocates of a healthy diet as well as supplements. My oldest takes probiotics (VSL #3#), zinc, fish oil, and Thorne multivitamins. So I am used to some of the supplements but not specifically those for tics/tourettes. I will learn :lol:

 

BTW - giving my son epsom salt baths led to me taking my own epsom salt baths. I cannot believe how soothing they are - I sleep so well after taking one. Think about it moms - the stress of having to be with all of this every day takes it's toll.

 

So glad I found this board ^_^ Many, many thanks to all of you!

 

Heather

Link to comment
Share on other sites

If your eldest son has ulcerative colitis you may want to get him and the younger one screened for gluten intolerance/celiac disease if you haven't already. Our ds recovered with a gluten and corn free low sugar diet. He had many digestive issues.

Link to comment
Share on other sites

Heather,

 

I am so excited about your son's MRI results. Thanks for updating us. I thought about him all week. Your story really gives me a better understanding of how a neurologist can say, "It's just tics."

 

As far as family history goes, yours sounds pretty benign to me. I try to remind myself we all have mutations in our gene pool and every family has THAT relative.

 

Have you given him any magnesium yet?

 

Let us know what the doc says on Friday.

 

Tami

Link to comment
Share on other sites

Hi Caryn,

 

My oldest was checked for celiac about a year ago. The test came back negative but last summer we tried the specific carbohydrate diet which avoids gluten. His sed rate went from elevated to a 3!!! He is now a freshman at UC Davis and at last check he sed rate was a 20. He loves dorm food. As a concession to me, he stays away from lactose which we found really irrated his bowels. My son’s colitis, I am absolutely convinced, came from long term antibiotic use for acne. To this day anyone says antibiotics and I cringe. Of course I know antibiotics are hugely important for many things but I wish we had never okayed it for acne use. Like you, we’ve encouraged a low sugar diet for my oldest. I tell him we “don’t want to feed the bad bacteria”. And a good probiotic is so important with GI issues.

 

And Tami,

 

Thank you for getting excited along with me - I am so relieved that the MRI was fine!!!! I bought Kids Callm yesterday and I’ll bring it to the appt on Friday. I’ll let you know how it goes. Thanks again!

 

Heather

Link to comment
Share on other sites

Have you looked into the possibility that the antibiotics after your son's surgery, and the dissapperance of tics at that time are related? Many of us have found that antibiotics helped drastically reduce and/or eliminate tics. Just a thought. :lol:

Link to comment
Share on other sites

  • 4 weeks later...

HeatherB,

 

As I was looking for gut info (youngest son's limited diet) regarding the Heparan synthesis and GlcNAc that I have recently become aware may play a role in my sons tics, I ran across an article that talked about disordered HS in gliomas. I knew that I had heard that word before and did a search of the forum, and up you popped.

 

Just wanted to tell you that you might want to read some of the studies from the link that I just posted on this thread (mentions 10,000,000. grant)

 

http://www.latitudes.org/forums/index.php?showtopic=3255

 

I don't know if there is info there that could be beneficial to your son or not, but possibly worth looking at.

 

If you see or make any connections, I hope you'll let us know.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...